My name is Janet Laperle. I am the oldest of 8 children. My parents had 4 girls and 4 boys! As I was very young, I had to get my tonsils out. I hemridged, I lost a lot of blood and oxygen. I ended up being epileptic. At the age of 2 years old, I was diagnosed with Rheumatoid Arthritis as well as Post Polio Syndrome.
I was born in the early 1950s. I went to a special needs school. Back in my years of school they didn’t have regular schools that were equipped for special needs. They didn’t have a 504 plan, mainstream classes and so on.
I have a cousin about my age who was born with a lack of oxygen and has Cerebral Palsy known as for short term (CP). As we were going to school, our mother was very involved in Parent Advisory Board. They helped fight for education, as well as to get students who have special needs to have a 504 plan and mainstreamed and soon. There were many more laws and legislation rights that I have not mentioned. Our mother would ask my cousin and I if we would want to help by going to The State House to speak to all the legislators. Our mother would get bigger groups each time to go! We would go very often! My aunt became a social worker and worked children services to help special needs to get the education they deserved!
Our mother, especially my aunt helped with a lot of these bills and laws. When schools accepted special needs they came up with IEPs, so teachers can up with a plan that can help adapt, it was worth the wait!
I didn't realize I started to advocate for myself and others who also couldn't advocate for myself and others who also couldn't advocate for themselves! As I was growing up and I was the oldest, I would help my parents watch my siblings while they worked. Because of my education growing up I couldn't get a regular job, my mother signed me up to go to OTC (Occupational Training Center).They would pay you cents for each tube you would caps on! You were lucky if you came home with 2-3 dollars a week! It gave me something to do, but I became bored quite easily. I went and got a sewing job. I was paid minimum wage company was bought out by Jewels Uniform. I worked there for about 5 years until the owner retired and sold the building. I applied to work at UMass Medical School, to clean rooms and be a housekeeper. I first got hired part time, 2 weeks later I was hired full time! I worked there for 19+years! There were times where I had to advocate for my co-workers as well as myself. We had a lot of rights, but they would not listen, so we would go higher up until we got the top or until they understood our needs! It wasn't easy but we did it!
About 4 years ago I went to get my mamma gram done and a few days later my doctor called my sister Monique and told her that I had cancer. My doctor wanted to know if she could her tell me that I have cancer and explain the cancer I had and she was going to give my sister a name of the doctor who deals with cancer. My sister Monique called Saint Francis Adult Day Health Program, I told the secretary that she was coming to pick me up, she and my brother in law took me to Dunkin Donuts and they bought me a coffee and said that we need to talk so we sat down, they both looked devastated but trying to stay strong to tell me. When Monique told I said "That's ok I got to see 62 birthdays, how many children don't get to see another birthday?" I am now 66 years old. I now have one more year left. If my mamma gram comes out negative I will be cancer free!
Going through cancer has made me stronger and I wouldn't let it control me, I had a lot of support from my friends and family who have and still support me. I thank them all, even god in my prayers! Even when I was going through my cancer treatments, I still continued to go my Adult Day Health Program. I started a knitting group at my program as well, when my niece was born pre-mature aI crochet baby blankets and hats for the NICU at UMass Memorial Hospital. I still do it to this day! I also help train the new services coordinators for DDS. I also go to Quinsigamond Community College to help teach students how I became an advocate and what it involves. We work on the budget as well as transportation. We also talk about going to The State House. How we fought for our personal lives. We also talk about The Mass Conference we have each year! My sister also asks me to go and be a part of her curriculum. She teaches at a middle school. She invites me so we can teach the class about different types of challenges such as my sister, you can see that see physical challenges. I have physical and mental challenges. Monique's is visual, mine is invisible! We also teach them how we overcome our obstacles. We show them what helps us. Then we do a lesson on creating a car for my sister to drive me to my doctor appointments and other places where I need to go and also places I like to go for fun! We do not tell them about her car, so we go around the room and talk about their ideas, if they have questions we have answers. The students have great questions and they are very creative, we also talk about advocating for yourself and others, we then we talk about MASS and what MASS is all about, what we do on the board, somethings we are working on, what we achieved, how I became an officer. We talk about retreats, funders meetings, go to The State House talking to our state reps and so on, we also talk about The MASS Conference, how much fun it is and what we do!
Once the students are done with their projects, they come up in front of the class and present what they come up with. They do an amazing job. After everyone is done, the teacher will mention that they are going to go on a field trip outside to the parking lot to see how my sister's car works! The students get so excited. The teacher doesn't even have to tell them to line up. When we go out, my sister will talk about all their creations and how similar they did. Tell them great job! Then she has me explain how I helped in and out of the car by demonstration it to them. The students love it.
I also belong to three advocacy groups. I belong to Mass Advocates Standing Strong, Central Mass Work Team, and I have my own advocacy group at St. Francis Day Health Program. I enjoy all of them. I also help train the service coordinators for DDS. I also have opportunities to go to the Quinsigamond College to teach college students how I became a strong advocate. We share our personal stories and then we talk about what we do at MASS and what MASS works on such as budgets, transportation, going to the Statehouse, and fighting for what we believe in. We speak to our legislators, state representatives, and congressmen. We talked and fought and won. We won the change the r-word and passed the real lives bill! Now the Nicky's Law. We let them know about our lives as well so they know where we come from and what we want! We don't give up.
We also talk about MASS and how we have a board. We have an executive advisory board as well as regional meetings. Once a year we have a statewide conference. The board and conference team worked really hard putting it together. We have 600+ people who come to the state conference.
I go to an adult day health program six days a week. There is a young woman who comes to the program. She can't hear or speak. My goal was to figure a way for her to communicate with the staff and her friends! I had come up with an idea. I spoke to an occupational therapist. She said great idea. I went to work. We came up with a picture book and all she has to do is just point! She loved it so much she took it home. So we had to make another one! We put eat, hungry, thirsty, want, drink, please, bathroom, no, yes, not feeling good, etc. Now she can communicate with anyone around her staff, friends, and whoever else.
This is why I love to advocate, not only for myself but for others as well. I also love doing fundraising for different causes. For example, MASS, my regional meetings, breast cancer, Easter Seals and other causes could be helpful too!
I also have testified in front of Senator Kay Kahn on the Real Lives Bill. Less than a month later, Senator Kay Kahn called me personally and said it passed. She also told me how proud she was! I was very excited!
I also went to the Statehouse in Boston to help change the name of the Department of Mental Retardation to the Department of Developmental Services. We all worked hard on that and we won! As you know, there is no "I" in "team."
I also helped change the "Independent Living for Retarded Adults." The new name is "Independent Living for Adults with Special Needs."
I thank Mass Advocates Standing Strong for helping me use my voice. I've been a chairperson, past chair and vice-chair. I've also been a chair on my central regional work team. I am also an executive, working with funders and the commissioner. MASS grew and became working with strong advocates. That's why there is "Nothing About Us Without Us." Why? Because there is no "I" in "team."
Thank you Mass Advocates Standing Strong for choosing me as an MC for the Conference 2019 and most of all, for making me the strong advocate that I am today!
Thank you,
Janet Laperle
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